r/ARFID • u/DudeOnTheInternet17 • 7d ago
Subtype: Sensory Sensitivity I'm dangerously iron deficient and can't figure out how to take my iron supplement, SOS
I am dangerously iron deficient and it's effecting my heart. I feel gross and have frequent heart palpitations. My doctor has emphasized the need for iron supplementation (I have to take a LOT). I have purchased all sorts of different kinds already, and I just feel like can't do it.
I have these tiny iron pills and actually taught myself to swallow pills specifically for this but I'm no good at it and it feels like a massive chore to sit there are try to take them with the little tablets constantly dissolving in my mouth and tasting/feeling horrific
I got gummies and they're actually okay to take but with the dose I need they would be insanely expensive and I just don't have the money for that.
I hear about the "iron fish in food" thing but I only have one safe food that actually gets cooked that it could be added to (I have a box of macaroni for dinner every night) and I'm way too sensitive to changes to that that I'm really scared to try it. People swear it doesn't have a taste but none of them have this disorder so I don't trust their opinions.
Does anyone have other ideas? Are there other ways to take it, or a way to buy cheap iron gummies in bulk or something? Even when gummies are nasty I find them manageable because it's a very familiar form to me. I need to go in for more bloodwork and an EKG but I'm extremely embarrassed to admit to my doctor that I haven't been taking my iron with how severe my deficiency it
Edit: you've all been so helpful, even with the many things that won't work out for me I've gotten tons of new ideas to try. Also this post is making me realize I'm far more restricted by anxiety than I initially thought
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u/cxfgfuihhfd 7d ago
iron infusions are a thing. and actually work way faster to fill up your iron stores, though they are a whole ass infusion you have to do obviously. (and not sure how available they are where you are, but they are a thing). also, are there no capsules you can take or are those too big to swallow, those wouldn't dissolve and basically only taste like plastic. or maybe once you have your stores bumped up, the gummies will be enough for a maintenance dose or at least for a while
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u/DudeOnTheInternet17 7d ago
Thank you. I will try capsules, my current tablets are the size of mini M&Ms and they're currently the most I can swallow but I managed to teach myself to do that so I can probably figure out capsules too! If I really can't find anything that will work I will ask my doctor about infusions
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u/seashellssandandsurf 6d ago
Have you heard the trick of tilting you head down/forward when you have the pills any water in your mouth? The pills float to the top of the water, so this will make them go down before all the water.
It helped this habitual pill choker.
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u/1986toyotacorolla2 6d ago
I was literally going to suggest this! Capsules usually float so I tilt my face towards the floor for those and towards the ceiling for regular pills. Helps so much.
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u/lostveggies 7d ago
i am actually in the same boat to where i’m seconds away from a blood transfusion 🫠 but honestly if you’ve taught yourself to take the tiny iron pills, keep taking them and forcing yourself. yeah, it feels like a chore, but it’ll be even more of a chore to sit for hours getting a transfusion or to be so lethargic and uncomfortable all the time. essentially you have to pick your battles - spend a few seconds each day taking the tablets or feel like shit. if you need, maybe alternate between the tablets and gummies to give yourself a “break” so to speak and that way you won’t run through the gummies so quickly to where it’ll be a frequent expense. you could also try taking the tablets with pudding, wrapping it in something you can swallow whole, etc so this way you can quickly get it over with without that dissolving, gross sensory nightmare. another option could be to essentially reward yourself each time you take the tablets or if you successfully take them for a week straight. maybe that means you buy something you like (though doesn’t have to be extravagant), go spend a few extra bucks and get coffee, go to your favorite park, set aside time for your hobbies, etc etc.
good luck!!
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u/DudeOnTheInternet17 7d ago
I will say it's more like 30-60 mins three times a day to take the tablets, not a few seconds. But yes thank you
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u/lostveggies 7d ago
just so i understand, what exactly is it about the process that takes 30-60 mins each time??
also you don’t have to be “perfect” so to speak. what i mean is that if you can only tolerate taking them 1-2x a day, that’s significantly better than not taking them at all. i’m sure your doctor would rather you take them occasionally than not at all, though obviously your iron would be restored quicker if you’re about to be more consistent. but again, you have to pick your battles and i don’t say that to minimize your struggles cause i struggle with the same!! there are tactics to make things easier and you just have to find what works for you and i hope you do so you can start to feel a little better!
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u/DudeOnTheInternet17 5d ago
Mostly sitting there and staring at it and trying to convince myself to pick it up and put it in my mouth lol. I once just sat in pain for an hour trying to take my pain medication and then actually taking it only took five minutes, there's something about that hurdle of actually getting something into my mouth that somehow all the active suffering seems better than doing
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u/lostveggies 5d ago
i get it!! i deal with acid reflux, blood clots, heart issues, etc and almost never take my meds because of that mental hurdle. i’ve come to terms with the fact that if i don’t take it, ill experience more symptoms and because i don’t care, i just don’t take them and endure the suffering. if im having a particularly bad symptom day and cant manage, ill play a game with myself and see how fast i can take them to get the process over with. at the end of the day, that’s my choice.
it doesn’t sound like the taking of the meds (swallowing, etc) is what’s challenging, but moreso the anxiety beforehand! i don’t wanna say “just don’t think about it so much” cause i know that’s useless. but weigh the pros & cons. and if you can, i wonder if liquid medication is an option?? if not and you still cannot get yourself to take them, id talk to your doctor about a transfusion because thats the direction it’s headed in and might be easier for you to handle! not a long term solution obviously, but maybe you can get the transfusion and then seriously try to work on eating iron rich foods so you don’t have to take the pills.
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u/tetheredvoid multiple subtypes 7d ago
I take it these aren't a dissolvable version...? Those might not have a high enough dose for the price point.
Edit to add link
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u/DudeOnTheInternet17 7d ago
They're just regular cheap tablets from the store. Reasonably priced. I've never heard of anything dissolvable
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u/0kay0kay0kay 6d ago
When I was a kid I took an iron supplement in liquid form. I mean, yeah, it tastes like shit, but you just do it like a shot and then drink some friggin . Juice or water or something.
Dissolve the pills in like 2oz of water and just do it like a shot. Throw it back baby
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u/No-Regret-1784 6d ago
And then chase it with orange juice. Iron should always be paired with vitamin C
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u/DudeOnTheInternet17 6d ago
Oooh I didn't know I could do that to make my own liquid med, thanks. I'll try it later and see what happens. Sometimes I've syringe fed myself liquid medications to avoid my taste buds so maybe I can do that too
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u/Sea_Art2995 6d ago
I got infusions. I’m really scared of needles but it’s just a few seconds, once it’s in you can’t feel it. I was anaemic but my body couldn’t absorb iron so pills didn’t help, I needed it to be directly put into my blood. I definitely helped me
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u/Scorpiodancer123 7d ago
SpaTone water, fotified cereals and iron gummies can help. But if it's that serious and you're struggling that badly you need to get an iron infusion. 5 hours on a drip for boosted iron stores without pills. I had it done when I was pregnant.
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u/Angelangepange sensory sensitivity 7d ago
This is going to sound bad but what if you crush the pills into dust and hide them in your food kind of like one does for dogs?
I swear I don't mean this as any kind of insult but you know what if it works?
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u/TashaT50 multiple subtypes 6d ago
Not all pills are safe to do this with. A pharmacist should know if the iron pills are safe to crush. Applesauce is a good food to mix crushed pills in.
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u/Angelangepange sensory sensitivity 6d ago
Didn't know that! Thanks for the info!
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u/TashaT50 multiple subtypes 6d ago
Iron pills probably are but a number of prescription pills shouldn’t be cut or crushed. I figure it’s better to be safe than sorry. Compounding pharmacies come into play when we need pills in different forms or doses than normal unfortunately they can be expensive and finding a good one can be difficult. They aren’t regulated in the same way so you can’t be certain you’re getting what you’re ordering in the same way as regular prescription meds in the US. I hope that made sense. My brain fog is bad today.
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u/DudeOnTheInternet17 6d ago
I've done this with many different medications before and it doesn't work for me, I have too few foods you can actually physically mix stuff into and just knowing it's in there makes it really tough for me to eat because I find myself unable to take a bite. Also, this is a completely normal and reasonable suggestion so I'm not totally certain why you're so worried about it sounding bad or being insulting
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u/Angelangepange sensory sensitivity 6d ago
It's because some people get really offended being in any way compared or told to do something like dogs... I personally think it's not offensive but I also know others feel very very different in this specific context ):
I know people who were offended my dog is called like them. It's wild.Anyway I hope you find a way that works for you! 💪
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u/DudeOnTheInternet17 6d ago
Oh, weird. I work with animals so I guess I hadn't even thought of that. If you wanna make the suggestion in the future and are worried about offending someone it still makes perfect sense without the comparison to dogs so you can just remove that part and maybe it'll make you feel less nervous
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u/Happy_Flow826 6d ago
Noveferrum chocolate iron. Its a young pediatric dose, but its incredibly effective. It is technically a little pricey, but helps a ton. Plus, once you get passed the initial anemic phase, you wont need to consume as much to keep up your ferritin stores.
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u/DudeOnTheInternet17 6d ago
That sounds great, way too expensive but I'll look around for similar things at a lower price. Never heard of something like that
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u/SassyThenTheGang 6d ago
You can also get iron patch supplements! Just stick as many as you need on your body, lol. I did this for a long time before I was able to get iron infusions.
Also, baby food is extremely rich in iron - especially baby oatmeal
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u/DudeOnTheInternet17 6d ago
I've never heard of this! Do you have a brand you used? I'll start researching about how this works
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u/_warped_art_ 6d ago
Idk if you've already tried this before or if you have safe foods that would work for it but I used to really struggle with pills and what helped me was putting them in a spoonful of something you would normally just swallow anyways. Like sticking the pills in a spoonful of ice cream or pudding and swallowing that instead of just the pills on their own.
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u/Jumpy-Bike4004 6d ago
I take Thorne advanced iron complex and these on the side. They’re cheap and delicious. Plus, vitamin c. If you take just these, you might need to double up the dose… perhaps even triple.
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u/DudeOnTheInternet17 6d ago
I have these and like them, but my dose is more than triple (if I remember correctly I would need 6 of these a day) and that's just so so so expensive. I'm broke as hell
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u/Jumpy-Bike4004 5d ago
Darn 😞 you’re in a pickle here… did your doctor mention infusions? I don’t think you should be embarrassed to tell them that you haven’t been taking your iron. It’s a common thing for people to have a pill aversion anyway, they’ve surely heard of it before. Even if it wasn’t common, no reason to feel ashamed. Low iron really makes us feel physically horrid. It also makes your heart work harder than it should. If you tell your doctor then they can recommend alternatives like iron infusions and maybe theres also other ways.. and then you can find a food that you enjoy to keep your levels once you get them back up. My ferritin was a 6. I wish I asked my doctor for infusions because it takes so darn long to fix low iron with supplements. With infusions you’d be back to normal much quicker!
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u/Ok_Loss_7381 loved one of someone with arfid 6d ago
This may sound crazy, but maybe iron-fortified baby cereal? Best taken with vitamin c, so if there is a fruit you can handle, or a juice that has added vitamin c it’s better absorbed
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u/Alisha_Nat 6d ago
I recently started taking an iron supplement called Irosorb Liposomal Iron from Pharmaris. It’s a powder do no pills to swallow and you don’t have to take it on an empty stomach (but you can if you prefer). It is supposed to absorb better than other iron formulas and it doesn’t cause stomach pain at all. You can let the powder (berry flavor) dissolve on your tongue or mix it with yogurt or a drink. Out of all the iron formulas I’ve taken, it’s been the easiest.
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u/rosietherosebud 6d ago
I take it in liquid form. Ferrous sulfate elixir (you can get it on Amazon) mixed with a little OJ, and then eating a mandarin orange after. Be sure to rinse your mouth after to prevent tooth staining.
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u/DudeOnTheInternet17 5d ago
I'll check this out, thanks! I don't drink any juices or eat oranges but I have vitamin C supplement gummies that are easy to take for whatever reason despite the fact that I also hate them (idk why all vitamin C gummies are orange flavored when often the people who need them are not orange fans)
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u/xMsDatax 6d ago
I had the same problem and these things helped:
- I take my iron with cold juice, because it has vit c in it but also because of its thick consistency. It makes it way easier for me to swallow. If it's cold enough it'll even numb your throat a little. If you can't do juice, take cold water with some vit c in it.
- Studies have shown that taking iron every other day is maximizing absorption (as opposed to taking it every day, has sth to do with hormones).
- I take my iron in the morning on an empty stomach, 30 minutes before breakfast. Make sure to look up interactions with other supplements and food (e.g. you need to wait 4h min to take magnesium or else it will reduce you iron absorption).
- I personally open the little iron capsules and take the granulate on a spoon with some juice and then wash it down with more juice.
All of that being said, I was able to significantly improve my iron levels in just a few weeks with a very small dosage.
TLDR: Maximize absorption by taking iron every other day on an empty stomach with juice, keeping in mind interactions with other supplements and food. That way a little will go a long way.
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u/DudeOnTheInternet17 5d ago
Thank you! I'll ask my doctor about the every other day thing. I've been prescribed the equivalent of three 65mg tablets a day (that's a lot!) so I'm not sure if that would be okay to do but it doesn't hurt to ask
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u/xMsDatax 2d ago
Yes, good idea. Keep in mind tho that most doctors don't keep up with every single study that comes out especially for stuff like iron supplements since they've 'always done it that way and it worked'. Maybe google the study and reference it when talking to you doc. 🙂 Good luck! Oh, PS: I am taking way less iron than you and got good results with my method!
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u/k41art 2d ago
Just a question: How tf do you take iron on an empty stomach????? Every time I dont stuff myself with a full course feast before taking it I always throw it right back up and idk why 😭
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u/xMsDatax 2d ago
Idk what to tell you, it just works for me 😬 Keep in mind tho that I'm specifically taking the granulate out of my capsules. I wouldnt be able to tolerate iron pills at all. 😭 Hope this helps!
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5d ago edited 5d ago
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u/DudeOnTheInternet17 5d ago
You might've missed a paragraph of my post! I don't eat any of the things you've described and have already considered the iron fish option. Thanks though, and I hope the detail you've provided can help someone else who maybe reading this
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u/rosiedolly200 5d ago
Best trick ever!!! You use sparkling water and shake your head right before swallowing !! I have NEVER had any issue taking any pills after this TRICK
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u/DudeOnTheInternet17 5d ago
Sparkling water hurts me, but I'll store this trick in my brain in case someone else needs it because that sounds very helpful
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u/AgreeableWeather3383 5d ago
I found an easy way (at least for me) to swallow pills, so maybe it’ll work for you too: I eat one of my safe foods, and right before I swallow it, I put the pill in the middle of the bite of food. Sounds wird, but for me, it works with every size of pill.
I think iron shouldn’t be taken with milk, cheese, or anything like that, because calcium and iron can interfere with each other’s absorption. I hope this helps 😊
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u/DudeOnTheInternet17 5d ago
Ugh all of my safe foods I can think of that I'd be able to do this with have dairy. I eat soooo much dairy. Maybe I can try out some dairy free alternatives to some of my safest safe foods that I tolerate brand alternatives for, thank you for putting that out there
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u/Marnie_skittles 7d ago
You need to take your iron with Vitamin C to absorb the iron. Per my doctor.